GRRRRRRRRR I HATE LE..........
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hello my swell friends. have not checked in for a while. Just had lymph node transfer 2 wks ago. Today was my first appt at home with loval PT for mld and that ever-so-loved wrap. signs are good that it has done well. arm measurements are down and tissue softer in forearm. still too early to tell but we are hopeful! hugs to all those suffering with this wretched part of BC. My doc offered the surgery as the LE lead to a major bout of cellulitis that almost cost me my new gap flap on left side. I also had a major pseudo bursa from that complication from the recon surgery in March. I am feeling much better everyday.
maggie
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My exercise is really, really helping me. On the days I wake up where I did a solid cardio workout my lymphedema is pretty good in the morning. I rode the spin bike for 75 mins last night with sleeve and gauntlet. This morning - noticable decrease in LD. It is definitely a pattern. I'm staying off the salt but still not budging on giving up coffee!
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Thank you ladies all so much for the web-site!! I did some of the exercises on my own and I really think they helped! I go to the therapist next Wednesday...
How does reconstruction effect Lymphedema? I didn't have it when I had by BMX but I was going to have it done the beginning of August. TE's then implants.
Carla
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I am feeling much better everyday.
Soooooo good to hear, mags !
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Carlads, some women find the recon stresses the LE. However, I had the opposite experience. Since the TEs were placed the LE is not as bad as it had been (I no longer need to wear my sleeve all day every day, for example). I think the PS cleared out scar tissue which opened lymph channels. Well, that's the only explanation I can think of.
Leah
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Carldads - what does your LE therapist say about reconstruction?
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Just had wonderful massage, wish I do do as well myself. I could feel her moving the build-up up my arm and across my back. LE nurse said that she wished others were as diligent looking after their arms as I had done a great job. Must get another full glove before we travel in August.
And she thinks the flare could have been caused by the prednisone.
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Linda, I haven't been to my therapist yet.. I go next Wed but that is something I was going to talk to her about..
Leah, that is good to know. I really haven't made the decision to do recon yet, but its good to know it actually helped you..
Hope everyone had a nice night...
Carla0 -
I didn't have recon.... but I ended up having 2 punch biopsies along my MX scar line (developed a wierd rash and they wanted to rule out skin mets), it triggered a fairly big LE bout for me, the biopsy was next to my sternum on the MX side, it caused swelling in my hand and fingers almost immediately following the biopsy. Made me think about what could happen for me if I ever had recon. We're all so different, and there are no guarantees!
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Linda,
I am still so undecided about Reconstruction.. I really don't mind so much being flat lol.. I was a 34DD before so this has been kinda nice. I think a lot will have to do with what my therapist says.
Another question, my arm swells just a little, most of my swelling and soreness is on the side right next to where my left breast was.. I wear sports bras.. Should I be wearing them tighter than normal? I really appreciate all the great information and advice you all give.
Carla
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Carla, there are lots of suggestions for compression for trunkal swelling at the bottom of this page:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htmTighter isn't necessarily better unless what you're doing isn't helping. If the sports bra is both reducing the swelling and reducing any discomfort or pain, then there's no need to change. Tighter isn't necessarily better even then, but the right garment really is important, whether thats a cami or a compression bra, or even just a swell spot tucked into the bra. Finding the right solution can take some experimentation!
Please do keep us posted. Gentle hugs,
Binney0 -
Binney..I'm wearing the bra they gave me after the biopsy along with a real good sports bra.my swelling did go down a lot..doin all the right things(I think) cause its not as bad as the past few days.
Alyson...mine came from the prednisone...another gift I don't want..I'm goin next week to PT.just gonna check it All out.0 -
Pleased its getting better Granny. My LE PT was sure the prednisone was the cause. My is improving in the arm but the truncial is not great. I have a really great sports bra and a couple of what I refer to as my Boadicea bras which are special mastectomy ones which have deep sides that seem to help. As Binney said some things are more comfortable and do help.
Must think about making dinner.
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I use the ameona cami - Hannah version - it seems to give me enough compression but wear something underneath it because of the narrow straps.
I don't use this store but it had a good picture:
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Gma, I like these shoulder cushions for too-narrow straps:
http://www.tlcdirect.org/Shoulder-Cushions.html?did=41Hugs,
Binney0 -
Thanks Binney - that helps!!!!
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I have a Cat Scan tomorrow to rule out cancer. Both NP's in my oncology office and my FP all think the swelling is LE related.
If the scan is clear tomorrow, they will send me back to the clinic to try and get the swelling back in control. I thought just my neck was swollen but today even my shoulder and around to the back of my shoulder was swollen. grrr LE Sucks just as bad as the C word today.Sat...I will start wearing a cami as long as I can stand it with this heat. Bring back Winter please.
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I'm crossing all things crossable for a good scan tomorrow KittyDog.
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Kittydog, hugs and prayers for tomorrow's scan. And also for a quick fix to the swelling. Grrrrr is right!
And yeah, I'll take winter over this summer heat any day!
Gentle hugs, and a big plate of brownies,
Binney0 -
So how long did you all survive your first wrap before you ripped it off.?
The LE T just wrapped the hand after I put on my sleeve. This was a learning thing but my left thumb and wrist were a bit swollen. So he wanted to see if it helps the swelling or not. We decided I need to see him once a week for another month until we get the hand swell in control and make sure I know how to wrap.
Oh, and good news is the right arm is doing great. Only one spot bigger tha last measurement.
I need you all to tell me I can do this..... Grrrr0 -
Just wanted to say Brightlife direct are awesome people! My Juzo gauntlet is too tight and as long as I have a box, I can exchange it for another size.. no problem just get a RA and send the sleeve back and they exchange it for a new one. Thank goodness. My right hand will not fit in a small anymore - changing to a med.
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I haven't been on this thread for awhile, but if it hasn't been mentioned, KT Tape (kinesio therapeutic tape) is on sale in CVS and I also saw it in Whole Foods. At first I thought I'd give it a try, but at my Whole Foods is was $20 so I didn't think it was worth experimenting. I have truncal/breast LE and after a year I have just learned to live with it. Anyway, I was at CVS today and there it was again, but now it was $12. I figured for that price I'd give it a try. Below is a link to some great information on breast/trunc and this is where I first saw the taping. I'm crossing my fingers that it will help some.
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Rockym- Thanks for the info and the link I'm pretty sure mine would be considered breast/trunc. I go to the therapist on Wednesday but I think I will go to CVS and see if I can find it!
Carla
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Rocky and Carla, Kinesio taping works extremely well for some people, and many do use it for truncal swelling. But it really isn't a do-it-yourself project, as an understanding of the layout and functional aspects of the lymph system is essential for "designing" the pattern and procedure and teaching you to do it on yourself. There's are real possibilities for further damage if you get it wrong. Do talk to your therapists about teaching you to do it. And if they don't have the training and you're still interested, call around to other well-qualified therapists in your area to find someone who has the training.
http://www.stepup-speakout.org/kinsiotaping_for_lymphedema.htm
Be well!
Binney0 -
There's are real possibilities for further damage if you get it wrong
True ( of course :>)
Even with my well trained Vodder instructor LEist using it for my finger, it became worse overnight. In my case, I ripped it off and gave up. She wanted to do some more trial and error, but the 'error' part of LE is scary.Be careful, ladies.
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"but the 'error' part of LE is scary."
Yes it can! Last night I tried using my isotoner gloves and laid on my left side. Some how got my arm kinked and woke up and my hand was throbbing and the rest of my arm was numb! 2 hours later I still couldn't feel the outside of my arm and my 2 smaller fingers.
Still having issues and work at the fabric store today. Hope the air works today, gonna be in the 90s with OR humidity
And yes, I'm compression bra, sleeved and gloved for work. I can do this. Btw only going to be working there until December - thanks to Obamacare, I lose my part timer insurance. Have no clue what I will do.0 -
So so much to learn about LE..
Hopefully I'll find out more on Wed. Everyone have a great weekend.
Carla0 -
Has anybody had any success getting more visits approved by insurance? I've already had my 20 for the year and now need to be seen again. I'm getting lots of burning and swelling in the back just to the side of both arm pits. Thanks
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I can do this.
Thats the spirit, gma! Keep the water and the deep breathing on your mind.I dont like to get into politics on such a large forum, but I must say, obamacare may hurt some ppl even as it helps others.
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Beatmon
All INS differ, but when my rotator cuff was torn many yrs ago, I got visits for 6 mos ( 3x a week) because my dr. wrote the ins a letter saying it was medically necessary, which it was.
You are doing daily MLD and all you can at home, correct ?
Give your INS a call and then contact your PCP.
Good Luck ...let us know.
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